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  • 1
    In: The Patient - Patient-Centered Outcomes Research, Springer Science and Business Media LLC, Vol. 13, No. 6 ( 2020-12), p. 719-728
    Type of Medium: Online Resource
    ISSN: 1178-1653 , 1178-1661
    Language: English
    Publisher: Springer Science and Business Media LLC
    Publication Date: 2020
    detail.hit.zdb_id: 2466680-4
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  • 2
    In: Pediatric Rheumatology, Springer Science and Business Media LLC, Vol. 21, No. 1 ( 2023-07-26)
    Abstract: Juvenile idiopathic arthritis (JIA) is a common pediatric rheumatic condition and is associated with symptoms such as joint pain that can negatively impact health-related quality of life. To effectively manage pain in JIA, young people, their families, and health care providers (HCPs) should be supported to discuss pain management options and make a shared decision. However, pain is often under-recognized, and pain management discussions are not optimal. No studies have explored decision-making needs for pain management in JIA using a shared decision making (SDM) model. We sought to explore families’ decision-making needs with respect to pain management among young people with JIA, parents/caregivers, and HCPs. Methods We conducted semi-structured virtual or face-to-face individual interviews with young people with JIA 8–18 years of age, parents/caregivers and HCPs using a qualitative descriptive study design. We recruited participants online across Canada and the United States, from a hospital and from a quality improvement network. We used interview guides based on the Ottawa Decision Support Framework to assess decision-making needs. We audiotaped, transcribed verbatim and analyzed interviews using thematic analysis. Results A total of 12 young people ( n  = 6 children and n  = 6 adolescents), 13 parents/caregivers and 11 HCPs participated in interviews. Pediatric HCPs were comprised of rheumatologists ( n  = 4), physical therapists ( n  = 3), rheumatology nurses ( n  = 2) and occupational therapists ( n  = 2). The following themes were identified: (1) need to assess pain in an accurate manner; (2) need to address pain in pediatric rheumatology consultations; (3) need for information on pain management options, especially nonpharmacological approaches; (4) importance of effectiveness, safety and ease of use of treatments; (5) need to discuss young people/families’ values and preferences for pain management options; and the (6) need for decision support. Themes were similar for young people, parents/caregivers and HCPs, although their respective importance varied. Conclusions Findings suggest a need for evidence-based information and communication about pain management options, which would be addressed by decision support interventions and HCP training in pain and SDM. Work is underway to develop such interventions and implement them into practice to improve pain management in JIA and in turn lead to better health outcomes.
    Type of Medium: Online Resource
    ISSN: 1546-0096
    Language: English
    Publisher: Springer Science and Business Media LLC
    Publication Date: 2023
    detail.hit.zdb_id: 2279468-2
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  • 3
    Online Resource
    Online Resource
    SAGE Publications ; 2022
    In:  British Journal of Pain Vol. 16, No. 4 ( 2022-08), p. 433-438
    In: British Journal of Pain, SAGE Publications, Vol. 16, No. 4 ( 2022-08), p. 433-438
    Abstract: Medical child abuse (MCA), previously referred to as Munchausen by proxy, can present as chronic pain. We report the presentation of five children seeking treatment for chronic pain who we identified as victims of MCA. The index case had essentially not eaten for the 6 years of her life due to alleged allergies to all foods, developed severe pain, used a wheelchair for ambulation beyond a few blocks, and was alleged to have dysautonomia requiring oxygen monitoring at night. Other cases posed as arthritis that resulted in foot amputation and total body pain, fibromyalgia with alleged mutation negative Stickler syndrome who had symptoms only in her mother’s presence, severe incapacitating intermittent pains along with abdominal pain that resulted in appendectomy, cholecystectomy, and pancreatectomy, and alleged disabling hypermobile Ehlers-Danlos in a non-hypermobile child for which the mother sought a power wheelchair. The unusual pattern to the pain, the presence of multiple additional, atypical symptoms and diagnoses, and a generally well appearing child are characteristic. The perpetrator is typically over-invested in the symptoms, derives tangible and intangible secondary gain from the child’s alleged illnesses, and is able to present the child in such a fashion to enlist the physician to aid in perpetuating the abuse. These children are highly over-medicalized and suffer significant morbidity. Multiple barriers exist to identifying and reporting these children to Child Protective Services, which need to be recognized and overcome in order to protect these vulnerable children.
    Type of Medium: Online Resource
    ISSN: 2049-4637 , 2049-4645
    Language: English
    Publisher: SAGE Publications
    Publication Date: 2022
    detail.hit.zdb_id: 2670872-3
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  • 4
    Online Resource
    Online Resource
    OMICS Publishing Group ; 2013
    In:  Pediatrics & Therapeutics Vol. 03, No. 01 ( 2013)
    In: Pediatrics & Therapeutics, OMICS Publishing Group, Vol. 03, No. 01 ( 2013)
    Type of Medium: Online Resource
    ISSN: 2161-0665
    Language: Unknown
    Publisher: OMICS Publishing Group
    Publication Date: 2013
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  • 5
    Online Resource
    Online Resource
    American Medical Association (AMA) ; 2020
    In:  JAMA Pediatrics Vol. 174, No. 10 ( 2020-10-01), p. 1001-
    In: JAMA Pediatrics, American Medical Association (AMA), Vol. 174, No. 10 ( 2020-10-01), p. 1001-
    Type of Medium: Online Resource
    ISSN: 2168-6203
    Language: English
    Publisher: American Medical Association (AMA)
    Publication Date: 2020
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  • 6
    Online Resource
    Online Resource
    Springer Science and Business Media LLC ; 2021
    In:  Pediatric Rheumatology Vol. 19, No. 1 ( 2021-12)
    In: Pediatric Rheumatology, Springer Science and Business Media LLC, Vol. 19, No. 1 ( 2021-12)
    Abstract: Disordered eating and chronic pain often co-occur in adolescents, but the relationship between these conditions is not well understood. We aimed to determine the prevalence of and to identify the clinical characteristics associated with the presence of disordered eating among adolescents with chronic musculoskeletal pain (CMP) presenting to a pediatric rheumatology subspecialty pain clinic. Methods This was a retrospective cohort study of pediatric patients presenting to a pediatric rheumatology subspecialty pain clinic for an initial consultation from March 2018 to March 2019. We complemented data from an existing patient registry with secondary chart review for patients identified with disordered eating. We compared patient characteristics based on the presence or absence of disordered eating among adolescents with CMP. Logistic regression modeling was used to determine factors associated with disordered eating. Results Of the 228 patients who were seen for an initial consultation in the pain clinic in 1 year, 51 (22.4%) had disordered eating. Only eight (15.7%) of the 51 patients identified with disordered eating had a previously documented formal eating disorder diagnosis. Through multivariate logistic regression modeling, we found that disordered eating was associated with older age, higher functional disability, presence of abdominal pain, presence of gastrointestinal comorbidities, and presence of anxiety (all p   〈  0.05). Conclusions Adolescents with chronic pain, especially those who experience gastrointestinal issues, anxiety, and greater functional disability, should be evaluated for disordered eating by the treating clinician in order to ensure timely and appropriate treatment.
    Type of Medium: Online Resource
    ISSN: 1546-0096
    Language: English
    Publisher: Springer Science and Business Media LLC
    Publication Date: 2021
    detail.hit.zdb_id: 2279468-2
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  • 7
    Online Resource
    Online Resource
    Springer Science and Business Media LLC ; 2021
    In:  Pediatric Rheumatology Vol. 19, No. 1 ( 2021-12)
    In: Pediatric Rheumatology, Springer Science and Business Media LLC, Vol. 19, No. 1 ( 2021-12)
    Abstract: During the Coronavirus disease 2019 pandemic, ambulatory pediatric rheumatology healthcare rapidly transformed to a mainly telehealth model. However, pediatric patient and caregiver satisfaction with broadly deployed telehealth programs remains largely unknown. This study aimed to evaluate patient/caregiver satisfaction with telehealth and identify the factors associated with satisfaction in a generalizable sample of pediatric rheumatology patients. Methods Patients with an initial telehealth video visit with a rheumatology provider between April and June 2020 were eligible. All patients/caregivers were sent a post-visit survey to assess a modified version of the Telehealth Usability Questionnaire (TUQ) and demographic and clinical characteristics. TUQ total and sub-scale (usefulness, ease of use, effectiveness, satisfaction) scores were calculated and classified as “positive” based on responses of “agree” or “strongly agree” on a 5-point Likert scale. Results were analyzed using standard descriptive statistics and Wilcoxon signed rank testing. The association between demographic and clinical characteristics with TUQ scores was assessed using univariate linear regression. Results 597 patients/caregivers met inclusion criteria, and the survey response rate was 42% ( n  = 248). Juvenile idiopathic arthritis was the most common diagnosis (33.5%). The majority of patients were diagnosed greater than 6 months previously (72.6%) and were prescribed chronic medications (59.7%). The median total TUQ score was 4 (IQR: 4–5) with positive responses in 81% of items. Of the subscales, usefulness scores were lowest (median: 4, p   〈  0.001). Telehealth saves time traveling was the highest median item score (median = 5, IQR: 4–5). Within subscales, items that scored significantly lower included convenience, providing for needs, seeing rheumatologist as well as in person, and being an acceptable way to receive rheumatology services (all p   〈  0.001). There were no significant demographic or clinical features associated with TUQ scores. Conclusions Our results suggest telehealth is a promising mode of healthcare delivery for pediatric rheumatic diseases but also identifies opportunities for improvement. Innovation and research are needed to design a telehealth system that delivers high quality and safe care that improves healthcare outcomes. Since telehealth is a rapidly emerging form of pediatric rheumatology care, improved engagement and training of patients, caregivers, and providers may help improve the patient experience in the future.
    Type of Medium: Online Resource
    ISSN: 1546-0096
    Language: English
    Publisher: Springer Science and Business Media LLC
    Publication Date: 2021
    detail.hit.zdb_id: 2279468-2
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  • 8
    Online Resource
    Online Resource
    Springer Science and Business Media LLC ; 2018
    In:  Multiple Sclerosis and Demyelinating Disorders Vol. 3, No. 1 ( 2018-12)
    In: Multiple Sclerosis and Demyelinating Disorders, Springer Science and Business Media LLC, Vol. 3, No. 1 ( 2018-12)
    Type of Medium: Online Resource
    ISSN: 2056-6115
    Language: English
    Publisher: Springer Science and Business Media LLC
    Publication Date: 2018
    detail.hit.zdb_id: 2842239-9
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  • 9
    Online Resource
    Online Resource
    Wiley ; 2021
    In:  Pharmacoepidemiology and Drug Safety Vol. 30, No. 9 ( 2021-09), p. 1162-1167
    In: Pharmacoepidemiology and Drug Safety, Wiley, Vol. 30, No. 9 ( 2021-09), p. 1162-1167
    Abstract: To examine the validity of International Classification of Diseases, 10th Revision, (ICD‐10) code‐based algorithms for herpes zoster (HZ) in the electronic medical record (EMR) of a large, integrated pediatric healthcare network and to examine baseline demographics and chronic comorbidities associated with HZ in a representative pediatric population. Methods We reviewed the electronic charts of all patients with a single ICD‐10 for HZ (B02.xx) as their primary or secondary diagnosis in the EMR of the Children's Hospital of Philadelphia (CHOP) healthcare network from January 2010–March 2019. The positive predictive value (PPV) for a single code for HZ was calculated and alternative algorithms were examined to determine which method resulted in the highest PPV. Results The PPV for a single ICD‐10 code was 91.7% (95% CI 80.8–95.4) for definitive and/or probable cases of HZ and 63.9% (95% CI 53.4%–75.5%) for definitive cases alone. Adding a prescription for an antiviral did not improve the PPV. However, adding a new code for rash entered within 1 week of the HZ code increased the PPV to 100% for definitive and/or probable cases but with substantial loss of sensitivity. A high proportion of children with HZ who required inpatient hospitalization had chronic disease (70%) and were on systemic immunomodulatory therapy (50%). Conclusions HZ can be identified with a high PPV in electronic medical records of children using ICD‐10 code alone. These findings lay the foundation for future pharmacoepidemiologic research to better understand risk factors for HZ infection.
    Type of Medium: Online Resource
    ISSN: 1053-8569 , 1099-1557
    URL: Issue
    Language: English
    Publisher: Wiley
    Publication Date: 2021
    detail.hit.zdb_id: 1491218-1
    SSG: 15,3
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  • 10
    Online Resource
    Online Resource
    Ovid Technologies (Wolters Kluwer Health) ; 2015
    In:  Pediatric Emergency Care Vol. 31, No. 9 ( 2015-09), p. 654-655
    In: Pediatric Emergency Care, Ovid Technologies (Wolters Kluwer Health), Vol. 31, No. 9 ( 2015-09), p. 654-655
    Type of Medium: Online Resource
    ISSN: 0749-5161
    Language: English
    Publisher: Ovid Technologies (Wolters Kluwer Health)
    Publication Date: 2015
    detail.hit.zdb_id: 2053985-X
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